TJ's Journey: Built on Love

TJ's Journey: Built on Love We created this space to share TJ’s health journey with our friends, family, and community — the highs, the challenges, the milestones, and the moments of joy.

This page is dedicated to our amazing son, TJ- a brave, funny, construction-loving little boy who is living with a rare genetic condition called DEGS1, a type of leukodystrophy. Welcome to TJ’s Journey: Built on Love 💛

This page is dedicated to our amazing son, TJ — a brave, funny, construction-loving little boy who is living with a rare genetic condition called leukodystrophy. It’s a place where we can keep everyone updated, raise awareness about leukodystrophy, and most importantly, celebrate the strength and spirit that TJ shows every single day. He may be small, but he’s mighty — and just like the diggers and bulldozers he loves, TJ is moving mountains with love, support, and courage. Thank you for being here. 💛
Your love and encouragement help us build a foundation of hope — one day, one smile, and one post at a time.

01/17/2026

A glimpse into TJ’s everyday routine 🤍

What looks like a quick moment is actually a very important part of each morning.
TJ takes his seizure medication to help prevent seizures, baclofen to ease the stiffness and tightness in his arms and legs, and his drug trial medication- a step forward filled with hope.

It’s not always easy, but TJ shows up every day with courage and resilience. These small, consistent moments are part of how we care for his body and support his journey—one morning at a time.

The start of 2026 has been full of good moments for TJ 🤍👉 He’s transitioned back into school and routines like a champ a...
01/14/2026

The start of 2026 has been full of good moments for TJ 🤍
👉 He’s transitioned back into school and routines like a champ and was proudly named Student of the Month-a celebration of his hard work and heart.
👉 He’s also returned to swim therapy after surgery, soaking up the water and the freedom it brings.
👉 TJ has been busy creating in his favorite enhancement art class, painting with joy and creativity!
👉 TJ was so touched to receive a sweet care and prayer package from a dear friend—a reminder of how deeply loved he is.

As we look ahead, we’re preparing to travel back to CHOP at the end of the month, thankful for continued care and hopeful for what’s to come. Thank you for cheering TJ on as he begins this new year with strength, resilience, and so much heart.

Today we had the opportunity to watch our friend Rhett play wheelchair rugby with his team, the Carolina Crash 🏉 ♿️ Watc...
01/03/2026

Today we had the opportunity to watch our friend Rhett play wheelchair rugby with his team, the Carolina Crash 🏉 ♿️
Watching these athletes continues to inspire our family, and TJ, by showing us what an inclusive, empowered future can look like for him and for so many others like him. We’re so grateful for role models who remind us that ability looks different for everyone, and that strength comes in many forms.

As we roll into a new year, we do so with gratitude for how far TJ has come, and hope for what lies ahead. We don’t know...
01/01/2026

As we roll into a new year, we do so with gratitude for how far TJ has come, and hope for what lies ahead. We don’t know what the future holds, but we know Who holds it. And for now, that is enough.
Here’s to a new year- full of hope, healing, courage, and continued love. Thank you for walking this journey with us 🤍✨

We are in awe of Uncle Nathan 💪🏃‍♂️In an incredible display of strength, grit, and heart, Nathan is completing the Faste...
12/29/2025

We are in awe of Uncle Nathan 💪🏃‍♂️
In an incredible display of strength, grit, and heart, Nathan is completing the Fastest Known Time on the Foothills Trail, running ~145 miles. He started at 7:30am on 12/27.
He ran in honor of TJ and to raise leukodystrophy awareness, and we are so deeply grateful for his love, sacrifice, and determination. What an inspiration to our family and to everyone watching. Thank you, Nathan, for running with purpose and heart ❤️

12/25/2025

Merry Christmas from TJ! All his dreams have come true- a ride on backhoe!
Jarryd McNeil check him out!

Merry Christmas Eve from TJ ✨ Thank you for walking this journey with us. We pray your homes are filled with peace, love...
12/24/2025

Merry Christmas Eve from TJ ✨
Thank you for walking this journey with us. We pray your homes are filled with peace, love, and the hope of Christ this Christmas. ❤️✝️🎄

🎄💪 Christmas Eve therapy! TJ worked hard today, powered by his love for diggers 🚜.We’re so thankful for therapists who p...
12/24/2025

🎄💪 Christmas Eve therapy! TJ worked hard today, powered by his love for diggers 🚜.
We’re so thankful for therapists who pour so much care into helping him grow- what a gift this season. ❤️✨

TJ received the most incredible surprise from his Nana and Poppa this week, an automatic chair lift for our stairs. 🤍Thi...
12/20/2025

TJ received the most incredible surprise from his Nana and Poppa this week, an automatic chair lift for our stairs. 🤍
This gift is such a blessing, not only for TJ as he grows bigger and stronger, but also for us as a family as we navigate everyday life together. It brings safety, independence, and so much peace of mind.
We are incredibly thankful for their love, and the way they continue to show up for TJ in such meaningful ways. What a gift to be so deeply loved and supported. 💙

✨ A great day in Philly! ✨TJ had a wonderful day of appointments, and it felt extra special to be welcomed back by our h...
12/12/2025

✨ A great day in Philly! ✨
TJ had a wonderful day of appointments, and it felt extra special to be welcomed back by our hotel friends- who spoiled him with a visit to the treasure box (a big win in his book!). 💙
Every doctor gave a great report and loved hearing TJ’s stories. We’ll plan to resume Botox injections in his ankles in the new year and reconnect with the Leukodystrophy clinic then as well. Next up, a local ophthalmology visit next week to continue monitoring his eyes as part of the drug trial.
Now we’re airport-bound, waiting for our plane and ready to head home. ✈️
And a huge shout-out to big sister Nora, who brought home first place at her school math expo with her friend Kaiyo, so proud of them! 🏆

We’re traveling to the Children's Hospital of Philadelphia tonight for a big day of appointments tomorrow, and TJ is rol...
12/11/2025

We’re traveling to the Children's Hospital of Philadelphia tonight for a big day of appointments tomorrow, and TJ is rolling into it with his usual joy and determination! 💛
On the schedule:
• 6-month hip surgery follow-up
• Baseline post-surgery check-in with Rehab Medicine (to help manage his spasticity and comfort)
• A team meeting with his Leukodystrophy doctor
We’re grateful for every opportunity to give TJ the best care possible- and even more grateful for all the love and encouragement that carries us through these trips ✈️ ✨
https://www.gofundme.com/f/support-tjs-fight-against-leukodystrophy

We have a busy week ahead as we continue moving forward in this journey. Tomorrow, we’ll travel back to Brenner’s for an...
12/07/2025

We have a busy week ahead as we continue moving forward in this journey. Tomorrow, we’ll travel back to Brenner’s for an appointment with a genetic neurologist our CHOP team recommended so we can build more local support for TJ.
Then Friday, we head back to CHOP for follow-ups with his orthopedic surgeon and rehab team, as well as a check-in with the lead doctor overseeing his drug trial.
We’re grateful for the continued care surrounding him and for every hand helping guide his steps. Thank you for walking with us, your prayers mean more than you know. 💛🙏

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Statesville, NC
28625

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